Benefits and the disabled a personal account

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					A CLAIMANT’S PERSPECTIVE




Benefits and the disabled:
a personal account
In September 2010, at the age of 50, Jan Morgan had a severe stroke
and was not expected to live. She recounts her personal experience
of the benefits system and the barriers to financial support that she
encountered.


                                   ‘Cheat’,‘Scroung
                                                   er’,‘Fraud’

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     Before her stroke,
 Jan Morgan ran her
 own consulting business
 where she worked with
 private-sector clients,
 including Serco, Capita
 and Steria, as well as




                                      T
 public-sector clients. One                    hese are just some of the         when an artery burst in my brain. This
 of her last pieces of work                    headlines and descriptions        caused a severe stroke which left me
 was with all the London                       used in recent weeks describing   cognitively and visually impaired,
 boroughs to support                           those dependent on the welfare    doubly incontinent and totally paralysed
 them in the use of the               benefits system and are words we read       on my left side. The prognosis was that I
 Department for Education             and hear on a daily basis, giving the      would need 24/7 care for the rest of my
 funded online checking               overwhelming impression that everyone      life. I was 50 years old and my youngest
 service for free school              on benefits is feckless, a cheat, a         child was aged just 12 years.
 meals applicants. Jan has            scrounger, a fraudster who doesn’t            I spent three months in hospital
 four children, aged 28, 25,          want to work and who is a drain on         receiving intensive physiotherapy.
 22 and 13.                           ‘us’: upstanding, honest, hardworking      These days I can walk slowly with a foot
                                      taxpayers. But what is it really like to   splint and a walking stick. I still have
                                      be on the receiving end of the benefits     a tendency to fall as my balance isn’t
                                      system, to be wholly dependent upon        great. My left arm remains paralysed
                                      welfare benefits?                           and I have some subtle cognitive
                                        Up until September 2010, I was a         di culties with memory and attention.
                                      higher-rate tax payer and a home           I have a carer for 14 hours a week. I
                                      owner. Following the death of my           have not been able to work since the
                                      partner in 2007, I was a single parent     stroke and am now wholly dependent
                                      and ran my own business. I had no          on various benefits. Being on the
                                      direct contact with the benefit system      receiving end of the benefits system
                                      and if honest, probably read those same    has been an eye-opener and I can quite
                                      headlines and thought, ‘How dreadful,      honestly say the most demeaning and
                                      something should be done’. Then, on 13     soul-destroying experience of my life,
                                      September, I had a brain haemorrhage       and that includes the indignities of the

28 | WORKING BRIEF | SPRING 2012                                                                           info@cesi.org.uk
                                                                                                 A CLAIMANT’S PERSPECTIVE




                                                                                                                                     PHOTOGRAPH BY PEARLEYE, WWW.ISTOCKPHOTO.COM
personal care I needed after the stroke.     The woman on the other                      November. I began the first of many
   After the stroke, no one ever             end seemed to get a                         telephone calls to the Department
expected me to recover, let alone walk       little impatient at my                      for Work and Pensions (DWP). Why
again, so 2011 should have been such a                                                   does DWP use expensive 0845 phone
positive year, one of celebration. Yet all
                                             inability to understand.                    numbers? No matter what time of
the joy of being alive and recovering as     She seemed to imply                         day, phone calls were never answered
much as I have has been removed by           that I knew I should                        promptly, I frequently spent 20 minutes
the sheer hard slog of negotiating my        be submitting medical                       on hold. Hour-long calls were the norm.
way through the adult social care and        certificates every six                       Just making one or two phone calls a
welfare benefits systems.                     weeks. It felt like she                     day took up so much time and e ort. It
   A friend very kindly completed a                                                      was so exhausting and draining.
benefit application on my behalf while
                                             thought I was ‘trying it on’                   I was politely informed that of
I was first in hospital. This was for the                                                 course my benefit had stopped as my
contribution-based Employment and            was left exhausted and drained.             medical certificate had expired. I was
Support Allowance (ESA) of up to                Pre-stroke I did all my banking online   confused, as I had not been aware of
£67.50 a week. I was later appointed a       and had not set up telephone banking.       the need for any medical certificate.
hospital social worker who completed         In hospital there was no internet access    The woman on the other end seemed to
future applications, such as the one         (no computers for patient use either)       get a little impatient at my inability to
for means-tested ESA and Disability          so even when my cognitive functions         understand. She seemed to imply that
Living Allowance (DLA). Each form took       began to return I had no idea what was      I knew I should be submitting medical
two sessions, each lasting over two          happening to my finances.                    certificates every six weeks. It felt like
hours, where the hospital social worker         The day after my hospital discharge,     she thought I was ‘trying it on’.
completed the application forms with         I logged onto my online bank accounts          A supervisor agreed to arrange
me. I could not have completed them          and found that the last benefit had          payment of monies from mid-
on my own and after both sessions I          been paid into my account in mid-           November to 17 December solely on

info@cesi.org.uk                                                                               SPRING 2012 | WORKING BRIEF | 29
A CLAIMANT’S PERSPECTIVE




                                             I have since heard,
                                             anecdotally, that anyone
                                             who fails to attend the
                                             WCA is deemed fit for
                                             work, as the assumption
                                             is that they deliberately
                                             chose not to come as they
                                             would be ‘found out’

the basis that I was still in hospital, as   information and share this across the       me to write a CV, interview practice
if she were doing me a huge favour,          various organisations and departments,      and one to identify my training needs.
but explained that I would not receive       as it was for my benefit and entirely        The training was limited to NVQ level 2
any more payments until a medical            appropriate to share.                       (pre-stroke, I had begun a PhD). I was
certificate had been received. It was            I received an appointment to attend      told I could do permitted work – up to
four days before Christmas. To add           my Atos Healthcare Work Capability          16 hours per week and receive no more
to the mess I was in the process of          Assessment (WCA) on 10 February             than £95 per week. They also pointed
registering with a new GP. Fortunately,      2011. I contacted Atos to explain my        out what would happen if I didn’t
the hospital agreed to provide me with       condition and that I couldn’t get to the    attend the sessions or give evidence of
a new medical certificate. One of the         appointment as I couldn’t leave the         my job hunting, i.e. my benefits would
community therapists brought it to me        house on my own.                            be reduced or stopped.
at home and a friend hand-delivered it          Innocently I didn’t give the matter         At this point what had been a mild
to the local Jobcentre Plus. I thought       another thought, but received a letter      amusement and confusion suddenly
that would be the end of the hassle.         accusing me of failing to attend my         began to feel incredibly scary. Was
   January 2011 began with the first          WCA and informing me that I was             DWP really expecting me to go to
of many calls to DWP trying to sort          deemed fit for work and placed in the        work so soon? I was barely coming to
my claim. I couldn’t understand why I        work-related activity group. I have         terms with my newly disabled state, I
would need to keep providing a medical       since heard, anecdotally, that anyone       could not look after myself but I was ‘fit
certificate every six weeks when I was        who fails to attend the WCA is deemed       for work’? In desperation, I contacted
paralysed and still receiving hospital       fit for work, as the assumption is that      my local MP, Chris White. He and his
physiotherapy. I applied for free school     they deliberately chose not to come as      researchers contacted Atos and DWP
meals for my daughter, but was told I        they would be ‘found out’. Though Atos      on my behalf. The local welfare rights
was not on a qualifying benefit so had        and DWP deny that this is the case,         team also supported me in submitting
to continue finding dinner money. At          throughout my year on benefits the           an appeal against the work-related
the end of January, the two-weekly           underpinning predication of approach        decision. I made many telephone calls
ESA benefit was not paid and I was            by DWP and Atos is that everyone is         and wrote several letters. Writing itself
left with no money again. More phone         trying to fiddle, cheat or scrounge,         is a challenge as I can only type one
calls. I also had to apply to my local       unless proved otherwise.                    handed. My printer is upstairs so I
council for council tax benefit. This            I was outraged, bewildered and           have to rely on others to bring printed
meant more means testing. I have             confused. I had carers who came to get      letters to me. I cannot insert letters
had to submit the same information           me out of bed, washed and dressed           into envelopes and need help with that
– bank statements, mortgage details          each morning; I couldn’t walk without       too, then have to wait for a visitor kind
etc – separately to DWP ESA, DWP             a foot splint or quad stick. I needed a     enough to post the letters.
DLA to social services (county council)      Lifeline as I was at risk of falling, my       I was in complete and utter despair. I
and Council Tax Benefit (district             shoulder was strapped and my left arm       was worried sick that my benefits would
council). Each and every time I was          remained paralysed. I was an outpatient     stop and that I would be forced to go to
told that because of data protection,        still receiving physiotherapy, I couldn’t   some form of work when I could least
the information couldn’t be shared. In       leave the house on my own, yet I was        cope. All I wanted to do was to focus on
my professional life I have worked with      deemed fit for work.                         my on-going physio. and occupational
the Information Commissioner’s O ce.            On 4 April 2011, two DWP advisers        therapies and my recovery. My stroke
The Data Protection Act was never            came to my home to conduct my back          was caused by high blood pressure so
intended to cause so much distress to        to work interview and to inform me of       the last thing I needed was stress, but
individuals. It is designed to prevent       the help I could receive to take my first    for the first months out of hospital, all I
inappropriate data sharing. In my case       steps to return to work.                    had was stress. I wrote more letters of
I would gladly give my permission for           I would have to attend at least five      complaint and made more phone calls.
one organisation to collect my financial      work support sessions, such as helping      Between January and April 2011, I had

30 | WORKING BRIEF | SPRING 2012                                                                                    info@cesi.org.uk
                                                                                                 A CLAIMANT’S PERSPECTIVE




                                            I have had to submit the
                                            same information – bank
                                            statements, mortgage
                                            details etc. separately to
                                            DWP ESA, DWP DLA, to the
                                            county council and district
                                            council

a lever arch folder bulging with papers     buy food, or anything else. There is         not something I could do on a regular
next to me on the sofa so that I could      no ‘spare’ money for spontaneity, for        basis. Yet DWP does not provide ways
refer to key letters and information        treats, for fun, for clubs, for hobbies      for me to have a period of transition; to
when needed.                                or for emergencies. There are times          gradually build up work as my health
   On 6 May 2011, I received notification    when we have very little food in the         improves. The only support it o ers is
that my appeal had been successful and      house. Cashflow is a problem, as              for low-level, low-skilled and low-paid
I was moved into the support group, i.e.    benefits are based on the days when           work. I do want to contribute and return
I was not expected to look for work. My     people received weekly pay envelopes.        to being a valued member of society,
relief was immense. Eight months after      Two benefits (Child Benefit and DLA)           but not at the cost of my emotional or
the stroke, I was now able to focus on      are paid four weekly, but not on the         physical health.
my recovery.                                same four weekly cycle, one benefit              Benefit regulations state that I can
   Subsequently I received                  (ESA) is paid every two weeks which          do voluntary work, but no more than 16
compensation from DWP – an ex-gratia        never coincides with the four weekly         hours a week, or earn up to £97.50 per
payment of a grand total of £25.00 and      payments, and Child Tax Credit is paid       week with no restrictions to my benefit,
a further sum of £1.92 in respect to the    weekly, which has been a lifesaver           although anything above £20 a week
one phone call they could identify I had    at times. Meanwhile all my bills are         may a ect my Council Tax Benefit. If I
made to them in direct connection to        paid by monthly direct debit (to take        earned £97.51 per week or more (less
my benefit. Unexpectedly, in a letter        advantage of the discounts available for     than minimum wage equivalent) my
dated 9 August 2011, I also received a      paying by direct debit). In my previous      benefits would be a ected. There is
written apology from Atos Healthcare        work I used to manage multi-million          no incentive for me to do, for example,
where they acknowledged that in             pound budgets but now I struggle to          half a day here and there and gradually
January ‘there had been su cient            manage my own cashflow. Council Tax           build up to sustainable employment as
evidence available to consider that a       Benefit is paid directly, as is mortgage      my stamina and health improve.
recommendation of placement in the          interest. My mortgage was taken out             The welfare benefits system is
support group should be seriously           when I was working and – though large        predicated on the basis that everyone
considered’. Atos did apologise,            – was a ordable. Now the benefits             on benefits is feckless, a drain on
sincerely, but then went on to state that   cover only a quarter of the monthly          society and only capable of low-skilled,
‘a record of my complaint will remain       amount. Arrears grow each month. I am        low-paid employment. There is much
on file for future reference’. Big deal.     at risk of repossession and given my         talk about protecting the vulnerable
How many others have been so poorly         age, dependency on benefits and the           and elderly but when you are on the
treated in similar ways? Atos may have      arrears, I would not be able to obtain       receiving end these sentiments are
apologised but there was no mention         a new mortgage. The week before              nothing but hot air.
of how it will learn from the mistakes      Christmas 2011 my central-heating               The welfare system does need reform,
it made in my case to improve future        boiler broke. We were without heating        but this needs to be a radical overhaul,
service and to ensure no other person       for three weeks until a very kind friend     starting with a change in attitude at
goes through such stress and distress. I    o ered to pay the £150 repair bill. I have   the very top. Of course the system
felt vulnerable and scared, so how must     no idea if I will ever be able to repay      needs tightening to prevent abuses, to
this process feel for the very elderly?     him and I worry about how I would            prevent frauds, but current proposals
   One year on my challenges are now        cope with other emergencies.                 are predicated on the fact that everyone
how to live. The benefits are more than         As to work, though I am no longer         is out to defraud. The reality is that our
an 82 per cent reduction in my former       expected to seek work actively, I do         society’s most vulnerable are struggling
income. I have reduced my outgoings         want to do something. I believe I could      to survive and are treated with little
as much as possible. My only outgoings      still provide a valuable contribution        respect by the system.
now are utilities, household insurance,     using my skills and experience, but my          A society can be judged by the
mobile phone, internet and TV. After        stamina remains low and my mobility          way it treats its children, elderly and
these are paid I have very little left to   poor. Travel is not impossible but it is     vulnerable. On this test, the UK fails.

info@cesi.org.uk                                                                               SPRING 2012 | WORKING BRIEF | 31

				
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Description: In September 2010, at the age of 50, Jan Morgan had a severe stroke and was not expected to live. She recounts her personal experience of the benefits system and the barriers to financial support that she encountered.